Reconstruction after breast cancer: It's not a boob job

It’s been nearly a month since my last surgery and the new girls are still a little scary looking. Righty’s recovering from a post-op infection that had me in the hospital on IV antibiotics for two days. Lefty’s missing most of her nipple, a casualty of my first surgery back in May.

They’re bruised and bandaged and look a bit like they’ve been in a bar fight. But they’re mine, thanks to the wonders of breast reconstruction surgery. Or as it’s popularly known, my “free breast cancer boob job.”

I’m being sarcastic, of course. Only a fool would confuse breast reconstruction with a boob job, but sadly, there seem to be a lot of fools out there.

I should know; I used to be one of them, until a radiologist uttered those three little words that have made such a difference to so many peoples’ lives: You have cancer.

After that, everything changed, including my understanding of what women have to go through to get their girls back. And trust me, it’s not easy and it’s not quick.

Unless you’re lucky. Or Angelina Jolie.

Jolie had immediate reconstruction after her prophylactic mastectomy. Breast tissue comes out, tissue expanders go in, then the TEs (as they're called) are slowly filled with saline until they can be surgically swapped for implants.

The actress didn’t have breast cancer – at least not yet – so she didn’t have to worry about any of the complications that can arise when you perform multiple surgeries on someone whose immune system has been compromised by chemo or blasted by radiation.

As a result, her recon took about three months.

Lisa Duncanson’s “immediate reconstruction,” on the other hand, began four years ago. And it’s still going on.

Lisa, who teaches law in Orange County, Calif., had tissue expanders put in at the time of her double mastectomy that were inflated over the course of two months, just like Jolie.

But before her surgery, she had chemo. And after it, she had radiation, which is great for upping your survival rates but not exactly Oil of Olay when it comes to your skin. Radiation changes it, making it more sensitive, harder to heal, harder to stretch. As a result, one of Duncanson’s tissue expanders broke through her skin. Three infections, two hospitalizations, months of antibiotic IV infusions and two “lat flap” surgeries later, and her breasts are still a work in progress.

Today

Lisa Duncanson was hospitalized for an infection acquired after her second surgery.

“Oh yes, I love the boob job I’m getting,” Duncanson joked to me on the phone, then went on to explain how she felt she’d been “sold a bill of goods” by doctors who weren’t completely forthcoming about the risks.

“There seems to be this almost paternalistic undercurrent to it all,” she said. “That we as women can’t handle the truth about what is really going to happen to our bodies and our breasts.”

And what really happens is often not pretty.

You’re thrown into a world of wounds and drains and aspirating syringes that look like something you’d use to impregnate livestock. Tissue dies, incisions refuse to heal and your body can be racked by infections that can last for weeks, even months.

Recent studies calculate the post-op infection rate for breast implant reconstruction (the most popular), as high as 35 percent (it’s about 2.5 percent for regular old breast augmentations) with about a 20 percent failure rate for the same procedure with radiation thrown in. As for other types of recon, a May 2013 study of 277 survivors who underwent “lat flap” reconstruction, calculated post-op complication rates at 33.5 percent for the breast site and 22.3 percent for the donor site.

“Every patient who had reconstruction said it was the biggest challenge of everything – mastectomy, chemo and radiation,” said Dr. Joanne Weidhaas, a Yale Cancer Center radiation oncologist currently researching genetic mutations.

Yet reconstruction is often cast as the “fun” part of breast cancer.

“People say things like ‘You’re going to be 80 and have the perkiest boobs in the pool!’” said Duncanson. “Even my first plastic surgeon was like, ‘You’re going to have even better boobs!’”

Bigger, possibly. But better?

Today

Lisa Duncanson has recovered from her breast reconstruction, and is back to playing gigs with her blues band.

Reconstructed breasts have no sensation, unless you’re lucky and some of your nerves grow back. And many don’t have nipples unless your plastic surgeon constructs them, which, again, is tricky if you’ve had radiation. Then there are the scars -- on your breasts, sure, but also on your stomach or back or butt if your surgeon needs to borrow tissue and/or muscle to make a breast mound. And let’s not forget the side effects like capsular contracture, adhesion pain, ripples and ruptures. Or the weeks (or months) of recovery.

Sure, many women come through with zero complications and lovely, natural-looking breasts (Angelina Jolie may or may not be one of them). But others are left with a “patchwork mess,” as Duncanson calls her reconstructed girls, breasts that look good in clothes but not so much otherwise.

Weidhaas would like to see more coordination between plastic surgeons and radiation oncologists so patients “don’t have their cancer come back and … don’t have a bad cosmetic outcome.” She’d also like to see more research conducted on why some people are more at risk for radiation’s skin tightening side effects.

“There’s definitely a genetic component,” she said.

Wonderful ideas, all.

Reconstruction’s not a perfect science, especially for those of us who’ve gone through treatment. But it’s come a long ways and new innovations, like tissue engineering, are ever in the works. I’ll admit my delayed reconstruction’s been a slog, even though I did my homework and thought I was prepared. Treating the whole process like chemo or radiation has definitely helped me power through my two surgeries and the resulting “minor” complications.

But I still have moments when I question whether it’s all worth it. Many survivors do and decide to skip the extra surgeries and the grief and live the rest of their lives breast-free.

At the end of the day, though, I’d rather roll the reconstruction dice and do what I can to get my girls back, to get my own back – or something close to it, anyway. For me, it’s about letting cancer know it’s not going to waltz off with two of my favorite body parts. For me, it’s about fighting back.

And, yes, healing.

“I know women who adapt but I did not adapt,” said Lani Horn, a 42-year-old math education professor from Nashville, whose three recon surgeries resulted in new breasts -- and lymphedema. “I always felt incomplete. Plus my kids would say things like my body wasn’t as cuddly as it used to be.”

Like me, and so many others, Horn just wanted to live her life without being “whacked over the head by cancer” every time she passed a mirror. And she's happy with her decision.

“Even with all my kvetching, I’m really glad I did it,” she said.

And I’m right there with her, despite the fact I’m currently rocking a set of Frankenboobs (just in time for Halloween!). They’re not pretty but then, they haven’t fully healed. Nor have I. But I will. I need to. I’ve got more surgery ahead.

Reconstruction, as they say, is a long road.

And the next person who refers to it as a “boob job” is going to get smacked with an IV pole.

Diane Mapes is a frequent contributor at nbcnews.com and TODAY.com and writes the breast cancer blog, doublewhammied.com. Diagnosed in February 2011, she underwent a double mastectomy, followed by chemo and radiation. She's currently living in a reconstruction zone.